Parenthood comes with joys and sorrows, great days and others full of struggle.

For many parents facing the additional challenge of raising a child with special needs, parenthood is filled with not just questions about which school to attend or day care program to enjoy, but what programs will accept their child. Instead of frantically chasing a baby who’s crawling, a child beginning to crawl at age 7 can become a milestone worth celebrating.

It’s complicated. It’s messy. It’s incredibly hard. But it’s their journey, and they’re happy to share the tips that keep them going, even in the darkest times.

Note: All families interviewed are clients or staff with Respite Care Inc., which provides short-term care for children with disabilities.

1: Take a breath

That’s what mother Holly Holland had to do during six months of testing and uncertainty for her daughter, Skylar.

When Skylar, now 8, was born, she acted like most babies. She cried. She smiled. She laughed. But when she was about 6 months old, Holland noticed that her daughter wasn’t keeping up with the milestones as had her older sibling, Sloan.

“She didn’t sit up on time; she never walked on time, and she never did a lot of things she was supposed to be doing,” Holland said. “I knew what I was expecting and that wasn’t happening.”

After six months of tests, Skylar’s condition remained — and still remains — undiagnosed.

Skylar struggles with seizures, doesn’t talk and has low muscle tone that kept her from taking her first steps before the age of 5.

She’s also the “joy of our life,” according to her mother.

“She’s very active and loving, and she’ll melt your heart; but she takes a lot of energy to raise some days,” Holland said. “She’s on Skylar time. She does things at her own pace, and it’s about seeing how to best work around some of her disabilities to make her abilities come through.”

“Skylar time” has taught Holland and her family to take a breath and take each day as it comes, no matter the hurdles or victories ahead.

“You have to take it in small bits,” she said. “Don’t try to find all the answers at once.”

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2: Accept help

That’s what Heather Matz, development director at Respite Care Inc., hopes all families with children with special needs will do. While her employer offers needed help and encouragement to local families, Matz’s family never had that option for her older brother, Patrick.

Patrick was born breach and oxygen-deprived about 40 years ago in Sioux Falls, S.D. It was a different time, Matz said, and families didn’t have the resources or support to adequately help children with disabilities.

By the time she was 5, Patrick would be institutionalized 3-1/2 hours away from her home.

“I have very few childhood memories of Patrick, but the last one I do have was when I was about 5 and we went to visit him. ... He was having a really bad day,” she said. “Doctors told my mom that she needed to move on with her life, so we didn’t see Patrick very much after that.”

She reconnected with her brother nearly a decade ago. Though he can’t speak, they sat together, held hands and cried. She was “thrilled” to hear that his nickname was Sunshine because of the constant joy he brought to others. They’ve stayed in contact ever since.

“I don’t know what it’s like to be a sibling when you have a facility like Respite Care to help,” Matz said. “I just know what it’s like when your family doesn’t have help and you can’t have that person you love around you. ... It’s awesome to be able to help provide a place for our kids so families don’t have to experience the things our family did.”

3: Find your team

That’s what’s helped give Jennifer Wittenauer strength in her journey with her daughter Elizabeth “Elli” Wittenauer, 15, who was diagnosed with a rare chromosome deletion syndrome.

Smith-Magenis Syndrome, among other things, means that Elli has an inverted melatonin cycle, behavioral issues, severe and sometimes violent tantrums and cognitive disabilities.

“Elli’s body makes melatonin during the day, so she would prefer to sleep all day and be awake all night,” she said. “That means a lot of sleepless nights that fostered into all sorts of behavioral issues. ... When she was little, she would have prolonged tantrums that made her aggressive to herself, others, pets, her brother and us. We had a violent, angry little one.”

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But at 15 years old, Elli is a “big girl” and a tantrum could prove even more dangerous for those around her. Out of fear of Elli hurting others, Wittenauer didn’t let herself rely on any sort of day care. Even after meeting the team at Respite Care, it took months for her to finally sign up her daughter.

“It was almost a guilt to have other people burdened with her care because we knew it was difficult for her brother and it would be for other kids, as well,” she said. “You can get a hug from her one minute and a punch in the face the next. That’s pretty difficult when you just want to be friends and play.”

But the team at Respite Care, Elli’s school and medical professionals that help balance her medications and the various aspects of her disorder have made a concerted effort to learn how Elli works and prevent tantrums. As a result, Elli has hardly had a tantrum while at Respite, giving her mother the peace of mind to work and know her daughter is both well cared for and safe for other children to be around.

“There’s no way we could ever leave Fort Collins because of that,” Wittenauer said.

4: Find a happy place

That’s why Jessica Sutherland, 18, is so happy.

Her mother, Cheryl Sutherland, said Jessica’s trips to Respite Care are about much more than her family needing relief — they’re about Jessica finding camaraderie and fellowship.

Jessica, one of four children in her family, has cerebral palsy.

“We don’t have anyone who can provide child care for us other than Respite Care for Jessica,” Cheryl Sutherland said. “But we’ve stayed because of the friendship that Jessica has. It’s really hard for kids with disabilities to have friends, but this is a place she can.”

Respite Care represents the spirit of inclusion Cheryl wants for her daughter, who thrives on human companionship.

“Kids love being here,” she said. “It’s not just a place for you to get a break; it’s a place for your kid to get a break from you and be with people who want to be here, not just because they’re being paid to be here.”

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5: Expect the unexpected

That’s what Bill Murphy has learned to do with his 7-year-old grandson, Kennedy, who has defied all odds since having brain surgery before he was 2 years old for prolonged and uncontrolled seizures.

“The doctors told us that he would never walk or crawl or talk,” Murphy said. “But Kennedy defies everybody. He has the attitude and will to achieve. He’s crawling like a madman. He’s almost walking with the help of a harness. He’s talking with some sign language and even a couple of words — his first of which was ‘Hi.’ He’s a social little trooper.”

It’s Kennedy’s resilient spirit and refusal to accept limitations that encourages Murphy and his daughter, who recently became a single mother after a divorce.

Expecting the unexpected — and being around others who do the same at Respite Care and other local service providers — is crucial to overcoming the impossible.

“When he was going through his surgery and everything after that, they were throwing around all these titles and terminology,” Murphy said. “You get so focused and scared about where this child will end up. ... But every day, that boy gets up with a grin, a smile and a ‘Hi.’ I’m in awe of him and his accomplishments.”

Sarah Jane Kyle is the Coloradoan reporter covering volunteerism, nonprofits and philanthropy. Follow her on Twitter @sarahjanekyle or on Facebook at www.facebook.com/ reportersarahjane.